Category Archives: autonomy
In 2007, Florida resident Michele Haddad was involved in a motorcycle accident with a drunk driver. She incurred a spinal cord injury that led to quadriplegia, and lived at home until she lost her caregiver and Medicaid informed her that she would only qualify for the services she needed if she spent 60 days in an institution. Aside from making absolutely no sense, as often seems to be the case with Medicaid bureaucracy, this barrier to accessing care was also highly discriminatory.
Haddad sued, arguing that she would suffer ‘irreparable harm‘ by being compelled to enter a nursing home, and the court agreed. The State of Florida was ordered to provide her with the community-based services she requested and was entitled to. Haddad will be getting a caregiver and staying at home, and we can chalk down another victory for disability rights. This is huge and I am really pleased by the positive outcome in this case. Haddad wanted to stay at home, she should have been allowed to stay at home, and it is heartening to read that the court ruled on the side of justice, bodily autonomy, and independence in this case.
The United States Government was also involved in the case, arguing on Haddad’s side. The Justice Department is currently fighting several discrimination cases, many of which build on the landmark Olmstead vs L. C. case that cleared the courts 11 years ago. Speaking about the Haddad case, Thomas E. Perez, Assistant Attorney General for the Civil Rights Division, said:
In the Olmstead case, the court recognized that the unnecessary segregation of individuals with disabilities stigmatizes those individuals as unworthy of participation in community life. By supporting Ms. Haddad in this case, we seek to ensure that individuals with disabilities can receive services in the most integrated setting appropriate, where they can participate in their communities, interact with individuals who do not have disabilities, and make their own day to day choices. (source)
I’m excited to learn that the Department of Justice is cracking down on discrimination and is specifically selecting cases that will promote full integration into society for people with disabilities. As I discussed a few weeks ago, passing antidiscrimination laws and winning victories in court isn’t enough to put a stop to discrimination and ableism, or to the social attitudes that allow for the dehumanisation and abuse of people with disabilities, but these cases do make a difference, and the direct involvement of the government shows that there is a genuine desire to address disability discrimination and to fight it.
Forced institutionalisation, as almost happened to Michele Haddad, has a long and very sordid history in this country. A common problem that I encounter in discussions about it is that it is not always recognised as such. The Haddad case seems fairly clear-cut: She clearly stated that she wanted to stay at home and she was told that she would lose services if she didn’t enter an institution. That sounds forced to me, and it sounded forced to the court, and most of the people discussing the case seem to agree.
But other cases are less clear. A lot of people with disabilities are not provided with information they could use to make choices independently. They are pressured by family members or care providers. Someone in a situation similar to Haddad’s might not be aware that home care was an option. All it would take is being whisked into an institution from the time of an accident and deprived of access to information suggesting that there are alternate modes of care. We see the same thing with decisions about medical care, where people aren’t provided with information and options, but simply told what to do.
‘Forced’ is a slippery word and it is not uncommon for people who want to deny that forced institutionalisation happens to find ways to weasel out of confronting it. After all, if you don’t say the word, it’s not happening, right? This persistent denial is one of the things that makes it so difficult for us to confront the real-world consequences of ableism. If we can’t get people to talk about the fact that forced institutionalisation happens, we can’t get people to talk about why it happens and we can’t get people to fight it.
Forced institutionalisation is not the only denial of rights and autonomy to people with disabilities that people think of as a thing of the past and believe doesn’t need to be addressed, countered, or fought any more. As a result, when we attempt to have conversations about these very real, very structural, and very present issues, we meet rhetoric like ‘oh, well, that doesn’t happen anymore, right? It sure was sad when it did, though.’
Michele Haddad, and thousands of people with disabilities all over the world, can personally testify that forced institutionalisation is not a thing of the past; here in California, for example, disabled activists are currently protesting cuts to In Home Support Services, a program that is vital for people receiving home care. Those funding cuts will result in institutionalisation for people currently receiving IHSS services.
Note: This post was written primarily with nondisabled readers in mind.
Cure evangelism is a scourge which seems unlikely to vanish any time soon, so we may as well address it and have a little chat about what it is, why it is problematic, and what you, personally, can do about it. This is not just a problem which affects people with disabilities. Fat folks are often subjected to a form of cure evangelism from people who believe that fat is something which needs to be (and can be) cured, for example, and anyone who has ever experienced temporary disability or illness can probably think of a few examples of cure evangelism which they have experienced.
What is cure evangelism?
Put simply, cure evangelism involves aggressively pushing a medical treatment or approach to a medical condition or disability on someone, without that person’s consent, interest, or desire. It takes a lot of different forms; the pregnant woman who is informed that she must have a natural birth and that if she thinks positive enough, it will happen; the cancer patient who is informed that ‘this great herbal supplement’ worked really well for the evangelist’s friend; the asthma patient controlling asthma with acupuncture who is constantly told to start using inhalers; the person with mental illness who is shamed for not taking medications.
In all of these cases, the cure evangelist identifies that someone has a medical issue, the evangelist has an opinion on how to treat that medical issue, and ou feels entitled to share it. Cure evangelism comes from all kinds of people, including people who have shared that experience and people who have not shared that experience. It all boils down to ‘there’s only one way to handle this situation, and that’s my way.’
Cure evangelism presupposes, of course, that only one treatment for something would be appropriate or necessary. It presupposes that all bodies and issues are identical, which means that experiences can easily be overlaid on each other: ‘if I have asthma, everyone must have asthma like mine.’ At its core, it is about assuming that other people’s bodies belong to us, are subject to our control, and are our business. Indeed, that we have a moral obligation to interfere with what other people do with their bodies. To save them from themselves.
Why is it problematic?
I think that the problematic nature of cure evangelism is multifaceted. There are the issues of bodily autonomy which I covered in the above paragraph, which become especially complicated for women, trans* folks, people of colour, and people with disabilities. Members of all of these groups have historically been treated like property and in some cases are still considered property. And I’m not even talking about the metaphorical sense in this particular case.
When you have been exposed to a culture which regards you as a publicly tradeable commodity, exercising control and autonomy become especially paramount. Being able to make decisions for yourself and your own body without the approval or consent of others is part of taking control of yourself and your identity. Thus, when people in these groups are informed that they must do something, it comes from a very entrenched culture of ownership. The person speaking often has privilege, and is exercising that privilege thoughtlessly. Many people claim to be well meaning, say that they just want people to be informed, but this presupposes that people are not informed on their own and that, moreover, it is only possible to reach one informed choice.
Another facet of cure evangelism is that it is, quite frankly, annoying. People present these things as though they are new and different and no one has ever brought them up before when in fact nothing could be further from the truth. Every single time someone approaches me with a new act of cure evangelism, it’s always to tell me about something which I am already well aware of. In some cases, it might be something I am already doing. Or something which I did which did not work. Or something which I explored but decided was not for me.
When a cure evangelist is cornering me and telling me to do this or that, it puts me in a bad place. Rejection is taken as rude, so I can’t just get out of the conversation. I don’t really feel like discussing my body with other people, let alone how I take care of it, and I’m not really interested in saying ‘yes, I’m actually already doing that’ or discussing any aspect of my treatment plans with someone who is not part of my treatment. It’s a personal matter.
What you, personally, can do about it.
Don’t do it.
It’s that simple. If someone chooses to share the fact that ou is disabled, or sick, or temporarily injured with you, don’t evangelise. Now, if someone explicitly asks you for advice and suggestions, by all means, do so. But don’t do it in a pushy way. Make it clear that these are things you know from your own experience, but that mileage may vary.
When someone chooses to talk to you about ou treatment, listen. Don’t comment. Don’t judge. If that person is doing something which you disagree with, remember that it’s about ou body and ou choices. Imposing your values accomplishes nothing. If someone asks for your opinion, offer it. But, again, don’t be pushy about it. People are engaging in an act of faith and trust when they share that with you; don’t violate that.
If you feel that you have information which is simply critical, instead of volunteering it, say that you have information/advice and it’s available if that person is interested. If that person says no, respect that.
And when people are having conversations in their own community; as for example when people with disabilities are having an open thread about an issue which pertains to them, don’t butt in if you aren’t part of that community. Feel free to watch and take information away, but don’t add your two cents. The people in that conversation don’t want to hear about your relative/friend. They are talking about their experiences.
And, let me tell you, when a friend who shares a disability with me says ‘hey, guess what,’ I listen and pay attention, because it is offered respectfully and with love and from a place of shared experience. And sometimes I say things like ‘hey, I am thinking about changing medications, does anyone have experience with [medication]?’ and people who actually have experience talk to me, and I learn things, and it is good. These situations are not cure evangelism, though. They are about connecting in a place of shared experience and sharing mutually beneficial information.
When I first saw this post on the ACLU’s blog about solitary confinement for juvenile girls in criminal detention, I was so horrified that I opened it in a tab and then couldn’t look at it again for several days. When I read through the entire post, I cried. I believe that when the United States takes control of a person, whether in criminal or immigration detention, they take on an obligation to care for that person, or at least not put them in mortal danger. And that is simply not happening. On the contrary, the solitary confinement policies seem to target girls with existing trauma and/or mental health histories for further isolation and victimization.
[Trigger warnings for sexual assault and abuse based on disability.]
In June 2008, the ACLU filed a class action lawsuit challenging inhumane practices at the Brownwood State School, a youth prison in central Texas. Girls at Brownwood are regularly placed in punitive solitary confinement in oppressively cold, concrete cells, that are empty except for a metal slab intended to be used as a bed. Solitary confinement is imposed for minor misbehavior, for self-harm or for expressing a desire to commit self-harm, and can be brief or can last for days, weeks and even months. It’s hard to imagine a more destructive reaction to a child in crisis, but it’s the norm. Unfortunately, these practices are not limited to Brownwood, or Texas, for that matter.
There are currently more than 14,000 girls incarcerated in the United States, a number that has been rapidly increasing in recent decades. Most of these girls are arrested for minor, nonviolent offenses and probation violations. Locked up under the guise of rehabilitation, girls nationwide — the vast majority of whom have been sexually/physically abused — are subjected to punitive solitary confinement, routine strip searches, and other forms of abuse. Meanwhile, they are denied the essential mental health care, education, and social services they need. Far from helping girls cope with the trauma they have suffered, youth prisons’ use of solitary confinement only retraumatizes them and further impedes their rehabilitation.
This is abundantly clear in a recent collection of testimonies from girls imprisoned in Texas juvenile institutions printed by Harper’s magazine this week. On newsstands today, the May 2010 issue features excerpts from ACLU interviews with incarcerated teenage girls. A few noteworthy excerpts include a girl who states that her crying is treated as “problem behavior,” another who was locked in a solitary confinement cell surrounded by her own vomit for over 24 hours, and perhaps even more disturbing, the following testimony from a girl in solitary confinement:
“A staff [member] gave me a pill, and he told me he was going to take me to get my meds. We ended up in this dirty room. It had pipes, buckets—it was dusty, it was nasty. I was like, I want to go to sleep, and he was like, You’re not leaving until we have sex. I didn’t know what to do. I didn’t know to scream, I didn’t know to do none of that stuff. I told him I wasn’t going to lie on that dirty floor, and he was like, Well, just bend over, and so—I didn’t know what he was going to do to me. I don’t know if he could’ve killed me and it would’ve been on the news: We just found a dead teenager at TYC and nobody knows what happened.— 17-year-old, Marlin Orientation and Assessment Unit
Brine and Kath traveled from Land’s End, England, at the very southern tip of the UK, to John O’Groats, at the very northern tip of Scotland, the two settlements in Britain that are furthest apart, by hand-pedaled wheelchair and bike, arriving in John O’Groats on the summer solstice.
A Voice For Neli [this site is by the mother of a young black man with autism who was recently arrested and harassed in Stafford, Virginia, primarily due to his race and disability status]
My son was traumatized. He has since been transferred to a mental hospital to receive treatment. I have placed a link to the story below for the world to see. How very sensational and yet sinister at the same time. What is so suspicious about a young man sitting under a tree at the library. The library is where my son goes quite frequently because there is a teen room there. What made him suspicious? Was it because he is a young black male? Possible gun? Why was the assumption made that he had a gun when there was no visible gun seen? Again was it because he was a young black man? These assumptions are what catapulted the events of that day and has turned our family’s life completely upside down.
Bad Cripple – Conjoined Twins, Disability and Ethics
Few books I read cause me to radically alter my preconceived ideas or thoughts. One such book that did this for me was One of Us by Alice Domurat Dreger. Dreger’s book, subtitled Conjoined Twins and the Future of Normal, stunned me. Prior to reading One of Us I thought that the effort to separate conjoined twins was logical, the only viable choice parents had even if the mortality rate for such a procedure was very high. By the time I finished reading Dreger’s book I learned that my preconceived ideas about conjoined twins, largely gleaned from the mass media, was wrong. Not only did I feel enlightened thanks to Dreger but I learned much about what she termed anatomical politics.
Astrid’s Journal – On Disability and Suffering
Disability is not a tragedy. Both of these framings assume that. Someone can be suffering and have a disability, but that doesn’t necessarily mean that the person is suffering because of the disability. (Correlation is not causation!) This immediately reminded me of the first time I fought this terminology, back in 2007. My support worker wrote into my care plan that I suffer from an autism spectrum disorder. I asked her to correct it to say that I have an ASD, which she at first refused. We got into a pretty lengthy argument, in which she used all kinds of ableist misconceptions about the suffering of people with autism, until she gave in and changed the wording. Most of these misconceptions are rooted in the medical model of disability. That is, they assume disability to be an inherently bad affliction, and of course from there conclude that disability is something someone suffers from. Here are a few examples of arguments people use to base the idea that one suffers from a disability, upon…
After Gadget – Lyme Awareness Month, Part I
The next three After Gadget blogs will specifically address Lyme awareness from the service dog perspective:
- How Lyme can affect your dog, and what you need to know about it (that your vet might not).
- How Lyme can affect you, and what you need to know about it (that your doctor might not).
- How Lyme transformed my experience specifically as a service dog partner.
Note: Since this blog series focuses on awareness, I’m honing in on the issues that I think are most important for you to be aware of. My goal is to prevent more cases of Lyme — especially chronic or untreated Lyme — in dogs and people. So, I’m going to skip a lot of general information. For example, telling you the name of the strange organism that causes this disease will probably not be what impels you to rethink the limp that comes and goes in your dog, or that frustrating “flakiness” of your sister-in-law. It won’t change your mind about whether you are taking adequate precautions against tick-borne disease (TBD). On the other hand, I hope this series will.
Leaving Evidence – Creating Collective Access
What is collective access? Collective Access is access that we intentionally create together, instead of individually. Most of the time, access is placed on the individual who needs it. It is up to you to figure out your own access, or sometimes, up to you and your care giver, personal attendant (PA) or random friend. Access is rarely weaved into a collective commitment and way of being; it is isolated and relegated to an after thought (much like disabled people). Access is complex. it is more than just having a ramp or getting disabled folks/crips into the meeting. Access is a constant process that doesn’t stop. It is hard and even when you have help, it can be impossible to figure out alone.
USA Today [so take it with a grain of salt!] – World Cup matches may boost your mental health
Scientists have shown that fans who feel personally invested in a team or, better yet, who attend games and cheer along with like-minded fans, reap the mental health benefits that come from a feeling of social connectedness. “The main thing that people achieve via sports fanship is a sense of belongingness, or connectedness, with others,” said Edward Hirt, a professor of psychological and brain sciences at Indiana University. “Sharing a common allegiance with others bonds people together in a special way. We can relate to others who share fanship with our team and feel a camaraderie with them that transcends ourselves.”
Content warning: This post contains discussions about abuse of people with disabilities, including physical assault and the use of restraints.
Last week, a major civil rights lawsuit was settled in Pennsylvania when seven families agreed to accept five million United States Dollars to resolve a case they filed against a teacher and her superiors, arguing that she abused the students in her care and her superiors did not take adequate steps to address it. It is the largest case of its kind in history in Pennsylvania, and one of the largest in US history. The teacher has already served six weeks for reckless endangerment; the question here isn’t whether she abused her students or not, but why the district failed to do anything about it.
These students were in elementary school. They were restrained to chairs using duct tape and bungee cords. The teacher stomped on the insoles of their feet, slapped them, pinched them, and pulled their hair. These nonverbal students apparently weren’t provided with communication tools that they could have used to report to their parents, which meant that the teacher was free to lie about the source of the injuries these children experienced while in her classroom. Horrified aides in the classroom reported it, and the teacher was simply reassigned.
The teacher’s defense was that she didn’t have training or support. This may well have been true. However, if that was the case, she should have recused herself from that classroom. Aides confronted her about her classroom behaviour and she said she ‘didn’t know how to stop.’ I’d say that asking to be taken out of that classroom would have been a pretty fucking good way to stop. If the defense to that is ‘well, it would have ended her teaching career,’ then may I suggest that a person who physically abuses children is not fit to be a teacher? That a person who feels that stomping on the insoles of a child’s feet is an appropriate method of ‘discipline’ is clearly not someone who should be in charge of a classroom?
‘We weren’t sure how a jury would view these facts, especially since children were involved,’ an attorney for the defense said, which is a polite way of saying ‘we are well aware that if this case had gone to trial we probably would have paid more than five million.’ The funds are being put in trust for the children, who, among other things, are in need of therapy.
There have been ‘hundreds of cases of alleged abuse and death related to the use of these methods on schoolchildren during the past two decades.’ The House of Representatives actually recently passed a bill addressing this issue, responding to a report from the General Accounting Office documenting abuse of school children across the United States.
The restraint of children with disabilities in school is, unfortunately, not at all notable. It’s a widespread and common practice and I see stories about it in the news practically every week. I’m sure a perusal through the recommended reading archives here would turn up several examples. This doesn’t make it any less vile or wildly inappropriate. I am heartened that legislation has been passed to address the issue, but outlawing abuse isn’t enough, and it’s clear that better training, accountability, and transparency are needed. The reports of those aides shouldn’t have been ignored. That district should not have reassigned the teacher to another classroom.
What is remarkable, and important to note, is that it takes a lot of money to take a case like this to court. Which means that settlements of this kind are only really available to families with at least some money. Even with lawyers willing to volunteer time, taking a case through the courts requires time, energy, the ability to pull supporting materials together, and patience. These things are not options for all families. Especially for parents with disabilities, the barriers to getting to court can be an obstacle so significant that even if they want to fight for their children, they might find it impossible to take a case to court.
Access to justice should not be dictated by social status and economic class, but it often is.
We shouldn’t have to pass laws saying it’s not ok to duct tape children to chairs, but we do.
Photo via The Canary Report, who writes: “Heralding MCS Awareness Month, profile photos radiating the warmth and vibrancy of yellow are popping up throughout our community on Facebook and on our network. Yellow, for those of us with Multiple Chemical Sensitivity, symbolizes the canary in the coal mine, with which we all identify. Our identity as a canary embraces and honors our bodies’ wisdom, and uses our song to alert the world of the menacing dangers of toxic consumer goods and a polluted planet.”
Photo from The New York Times Vows article about Lammers’ and Hoyle’s wedding. While Lammers was using a cane due to an injury, rather than a disability, it was still nice to see a mobility aid in the New York Times like this.
Disability Scoop – Disability Advocates Reserving Judgment on High Court Nominee
Disability advocates were hesitant to say much about [nominee to the United States Supreme Court Elena] Kagan. Without a judicial record, they said little is known on her positions regarding disability rights law. “I think her hearings are going to be important,” Louis Bossing, senior staff attorney at the Bazelon Center for Mental Health Law, said of Kagan’s upcoming Senate confirmation process. “We’re going to spend time working with the judiciary committee so the senators can ask questions we’ll need to know whether to support or oppose her nomination.”
The New York Times – When Treating One Worker’s Allergy Sets Off Another’s
On the first day Ms. Kysel took Penny, [her allergy-detection service dog] to work, one of her co-workers suffered an asthma attack because she is allergic to dogs. That afternoon Ms. Kysel was stunned when her boss told her that she could no longer take the dog to work, or if she felt she could not report to work without Penny, she could go on indefinite unpaid leave. She was ineligible for unemployment compensation because of the limbo she was put in.
Ghana News Agency – Women with disabilities demand respect from society
Women with disabilities in the Upper East Region has called on society not to see them as liabilities but help empower them so they could take care of themselves. They complained that many people regarded them as a curse to their families and did not want to associate with them especially in issues of marriage. They explained that when they receive marriage proposals the potential groom’s family would usually argue that the disabled woman would join the family with her curse and discourage their son. These concerns were raised at a meeting of the Association of Women Living with Disabilities, held in Bolgatanga, to discuss their situation and find ways to make things better for their members.
MB the MD/MC – on (dis)ableism
I have a lot of people in my family with disabilities, though none of them would consider themselves disabled. In talking with another radical woman of color, it seems that disability is so the “norm” in our communities, it’s often not marked as an identity unto itself. I often wonder about what a release it might be for women of color to see disability as a framework that intersects with race and gender, to not always feel the need to keep fighting, even when it hurts, to let go of the ways that we as cis and trans women of color in particular, have taken up ableism in ways that reproduce harm to ourselves and the communities we “work” so hard and care for. Why does disability mostly look white?
Associated Press –Feds Sue Over Treatment of Disabled in Arkansas
The federal government accused Arkansas in a lawsuit Thursday of leaving people with severe mental or physical disabilities with no choice but to go into state institutions. The Justice Department lawsuit accused Arkansas of a “systemic failure” that places people in institutions when the state should pursue less restrictive avenues for their care. “The state gives individuals with developmental disabilities the draconian choice of receiving services in segregated institutions or receiving no services at all,” the lawsuit states. The federal government accused the state of violating the Americans with Disabilities Act, which guarantees people with developmental disabilities the right to live in the most appropriate setting for their needs. The state has six centers for the developmentally disabled that, in all, care for about 1,100 people.
Photo credit unknown, seen at Nowhere Pixie.